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Cancer Treatment: How and When Do We Reach a Point Where More Treatment is Too Much?

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This topic is very central to treating cancer, but that doesn’t make it easy. It’s not one that I think is taught in medical school, but rather one that is learned over the course of directly caring for patients over time. It’s incredibly complex because doctors have remarkably different styles in their approach, and even the same doctor may work very differently with different patients. For something that is so integral to the practice of oncology, the topic of how and when do we get to a point that further anti-cancer treatment isn’t advised is a murky mess.

There are several major factors in this discussion. First, patients and their circle of family and friends have their own preferences and predispositions. Some patients come to their oncologist saying that there’s no way that they’re going to take chemotherapy, others say that they want everything possible and that they never want to stop trying, while others have more of a middle ground and express a deep concern for their quality of life along with our efforts to prolong survival. Of course these preferences infuse our mindset.

Second, physicians have their own philosophies. I have worked directly with physicians who are averse to treating beyond a point where there is an established benefit for treatment, while others are committed to treating patients to the point that their patients and family members worry about hurting the feelings of the doctor by expressing ambivalence or a complete desire to stop treatment. Some transition to hospice readily, while others rarely initiate a discussion of hospice until their patient is barely able to participate in the conversation.

In all of this, the goals of treatment are important. If the goal of treatment is cure, and that’s a feasible possibility, this tends to trump many other concerns, and we’re often inclined to accept a significant risk of short term toxicity, and even real danger, for the potential prize of a cure on the other side of the tunnel. But most of the time when there’s a major question about how to proceed, it’s because cure is no longer a goal we can realistically focus on. For oncologists, significant improvement in overall survival is generally considered the leading factor we’d prioritize, though the other side of the coin is the tolerability of the treatment. An improvement in survival that amounts to just a few weeks is harder to justify if it significantly compromises a patient’s quality of life, but even a very modest benefit may well be “worth it” if it’s anticipated that the risk of feeling poorly is very low.

In the gray zone are endpoints like response rate and progression-free survival. We are happy to see tumors shrink and/or have the cancer remain stable for longer, but if patients don’t live longer and experience side effects from the treatment, it’s hard to be very enthusiastic if the only benefit is one you need to show a patient on a scan.

Improving cancer-related symptoms is a very appropriate goal of therapy, even if it’s not associated with a survival benefit. Just as survival benefit needs to be be considered alongside the toxicity of the treatment, an improvement in quality of life can be a sufficient goal of treatment even without prolonging survival. Over the last few years, I’ve also come to sense that for some patients, not being on treatment is a very unpleasant, anxiety-producing symptom that can potentially be alleviated by the hope provided by ongoing therapy.

Putting this all together, a strictly data-driven oncologist very skeptical about the value of any further treatment might well recommend only the proven, evidence-based standards of care (or be pessimistic enough to recommend even less than that). In some medical systems, this is the approach that is enforced because only the evidence-based standard treatments will be offered.

On the other end of the extreme are the oncologists who are optimistic enough or so disinclined to ever “give up” that there is always another treatment available for a conscious patient, and sometimes options for those who are comatose. There is almost never a decision of when to stop treating if a patient can find their way into the clinic or be admitted to the hospital.

Between those two perspectives (neither of which is rare), there is a very wide continuum in which the oncologist is inclined to consider and very likely offer treatments that are unproven but might be helpful. The decision of when to continue with more anti-cancer treatment vs. transition to a focus on symptom management and quality of life is the product of the combination of the possibility of benefit from unproven drug X, the probability of it causing side effects that will worsen quality of life, and the patient’s desire for more treatment. We also have our own biases, such as feeling a compulsion to treat younger patients extremely aggressively. The problem with both the reflexive temptation to over-treat younger patients, or anyone who desperately want the most aggressive treatment we can imagine, is that the biology of a cancer doesn’t care about these factors and can’t be completely ignored. These situations are often among the hardest we face, since a deep desire for more treatment doesn’t make a later therapy more likely to help or less likely to be toxic.

Given that both doctors and patients have their own philosophies about these issues, I think it’s appropriate that oncologists bend with the needs of their patients, and I know that patients often need to adjust their expectations based on what their oncologist recommends. But even with some flexibility on both sides, incompatibilities do emerge: no oncologist is the right fit for everyone, and I’ve had a few patients leave my practice to seek an oncologist with a nearly inexhaustible list of possibilities. There are certainly oncologists who have a large panel of patients who eventually find them after being treated by other oncologists who advised against more treatment, while the patient is not ready to consider that.

My general approach, with some lattitude based on the patient I’m working with, is to be very eager to recommend treatments that have an established benefit and to be very agreeable about continuing with less proven treatments that have a good rationale and are unlikely to be prohibitively toxic, as long as a patient has a good enough performance status to continue with treatment. My personal threshold to favor a transition to a focus exclusively on symptom management and comfort is when I think it’s clearly more likely that additional treatment is going to harm a patient than to help them. If a patient is debilitated enough, we do eventually reach a point when further treatment would have a greater chance of worsening survival than improving it. I do accept the idea that relieving the anxiety of being off of treatment can represent an improvement in quality of life, but that in itself can’t justify harming a patient with the physical side effects of unhelpful treatment.

All of this said, there is no question that different oncologists have different philosophies that are not wrong and may be a better match for some patients. However, it’s important to bear in mind that across the US, oncologists are very, very late in recommending hospice to patients, probably in large part because it is a difficult conversation for any of us to have. While hospice is most likely to help patients and family members who have the opportunity to develop a rapport and relationship with the hospice team, it’s typical for patients to be referred to hospice mere days before they die — an opportunity for better help lost.

I welcome people’s questions and comments on this difficult and very personal issue.


16 Responses to Cancer Treatment: How and When Do We Reach a Point Where More Treatment is Too Much?

  • JimC says:

    Dr. West,

    Thank you for this excellent post on a very difficult subject.

    I think that anyone struggling with these questions might want to read the discussion begun by GRACE moderator Catharine back in July, sparked by an article she cited from the New Yorker. As Catharine warns, the article contains frank descriptions of end of life situations, so some may not want to read it. But the lengthy discussion among GRACE faculty and members is very thoughtful, with many well-stated perspectives which may provide valuable insight to patients and caregivers.

    Jim

  • JimC says:

    And of course I forgot to include the link to that discussion: http://cancergrace.org/forums/index.php/topic,5558.0.html

    Jim

  • pedalon says:

    Thank you Dr. West for that incredibly important and appropriate post. I have had experience with hospice with both my parents. My mother who died of lung cancer (adeno, never smoker) four years ago today was on hospice for three days. This was due to her oncologist who kept telling us not to worry, we just needed to get the medication started. Her quality of life for the last few weeks would have been better and we, the caregivers would have coped better if we had brought hospice in earlier. In my father’s case, the oncologist was very upfront about his age and toxicity of treatment for esophageal cancer so we brought in hospice immediately. He had a very good quality of life for his last months.

    I am hoping things are improving as far as more straightforwardness regarding toxicity of treatment versus benefit. I worked at a VA hospital for 20 years and remember early on patients being treated on the day they died. Head and neck cancer patients underwent difficult disfiguring surgeries for the benefit of just a few extra months. In the later years things had changed and there were more multidisciplinary family conferences where the patients comfort and quality of life were the focus.

    Right now I’m doing pretty darn good, but at some point when quality of life is declining and before my smile fades, I will be very grateful for the wonderful people from hospice.

  • Dr West says:

    Thanks to both of you for your comments. Jim, it’s great that you both brought up and provided the link for the New Yorker piece by Atul Gawande that covered these issues very artfully, including the honest appraisal of the difference between what we know, that we often over-treat many patients in part because it’s easier to continue with one more futile therapy than face a difficult discussion head on, and what we do: even he acknowledges that he fell into the pattern of a likely empty hope for more treatment rather than confront a painful reality.

    Though there is no doubt that there are a wide range of views among individual people, in the US today, we don’t do well accepting death as an inevitable end of the life cycle. Many people are poorly served by evolution of the medical world into “warriors against death” at nearly all costs.

  • ts says:

    Thank you for this timely piece. The shifts in thought that have occurred for me in the last 2 years or so are humbling. I don’t know if anyone knows what they will do before having to make these decisions. I’ve surprised myself continually. I still need to have the discussion with my oncologist to assure myself that we stay on the same page till the end of the story.

  • ctsinclair says:

    Great post Dr. West,

    As a palliative care doctor, I appreciate the difficulty of these discussions very much. Often times it is important to remember it is a sort of dance between the doctor and patient (and often the family). There is a lot of give and take and reading signals from the dance partner for clues on what the next move is. Sometimes toes get stepped on, but with training, experience and a dash of humility for what medicine can and cannot do, we can all get through these vitally important goals of care discussions.

    Christian

  • Dr West says:

    I think that’s a very good point that this is absolutely not a unilateral communication from doc to patient. This is an ongoing interchange, and the same oncologist with his or her own internally consistent philosophy will need to have some flexibility depending on the preferences of the patient and family, as well as what the cancer and overall medical situation throw at you. Perhaps the people most skilled in these discussions are those who are most adept at listening/reading the cues and adjusting accordingly, rather than pursuing a more standard script or strategy.

  • carmen2u says:

    Great post. No medical decision is well taken if done reflexively, as you point out. The common thread in figuring out what works is listening closely to the patient’s wishes and bringing your expertise to bear so that the preferred path is clearer to discern. I am glad you are raising awareness about hospice. As doctors and lay people become more comfortable in discussing this topic, we as future patients will have better choices to choose from if and when serious disease overtakes us. I look forward to a time when the same level of compassion that greeted me into the world is extended on my way out. :)

  • Anniekos says:

    I truly appreciated your post. I’ve been searching for help/support relating to my husbands illness. He has had Idiopathic Pulmonary Fibrosis for over three years. This past July he was diagnosed with stage IV non small cell cancer of the lung that has spread to his bones and some muscle. He has had 10 radiation treatments and 18 chemo therapies. About 16 of the treatments included taxol and carboplatin. After a bad reaction to the carbo, the next few treatments were just taxol. We are finding it hard to differentiate between symptoms of IPF and lung cancer. His oncologist is encouraging more chemo. My husband has been off chemo for a month and doesn’t want to continue for at least another month. How do we decide if more chemo is called for when he suffers from the IPF and emphysema??

  • fortmyr says:

    Dr. West, thank you very much for this post (I had missed it previously). I would add, if I may, that patients evolve through the cancer journey at their own pace and, as I found, we (as relatives providing support) also have to find a way to accept the patient’s view on all this in order to accompany them in the best possible way (e.g. do they only want to focus on possible treatments; if the cancer grows, do they wish to start talking about end of life issues; etc.). Personally, I’ve learned a lot accompanying my sister through this journey e.g., that I feel way more comfortable talking about potential treatments then about death, but I also learned that I will have to make place for other types of conversations if I am to respect her.

    Myriam

  • Dr West says:

    Sorry for the delay in responding. I think the key is to see how he is doing on a break. I think a break can be a very helpful thing. If he’s feeling the same or better, chemo may be very appropriate. On the other hand, if he isn’t feeling up to it, and especially if he is worse, it’s likely that this from some underlying progression of the cancer, and it may be wiser to hold off and focus on him feeling as well as he can without adding one more challenge with further potentially difficult chemotherapy.

  • Rita says:

    Thank you very much for this post, Dr. West. I missed it earlier since I haven’t been on Grace as much lately due to recent time-starvation as I work to care for my never-smoker husband’s metastatic andenocarcinoma of the lung.

    Not only is your post helpful, but the comments have given me some new insights, too.

  • ssm says:

    How does one decide when it is appropriate to ask for hospice care..the best venue for getting hospice care… Home vs a facility.. Doctors obviously can’t play God and are very reluctant to give a ‘timeline’ understandably as well as to keep hope alive. My husband is very old (78) has mixed connective disorder with pulmonary fibrosis.. Still actively engaged at multiple fronts. My daughters lives in SFO and NYC and one of them visits often .. But I don’t want to be a burden on any 9one. Would welcome help in decision making. I am on Alimta, second cycle tomorrow and to begin RT for Metastic brain lesion (5mm in the frontal lobe)..there may have been hemorrhage in the lesion in Sept. when i was hospitalized with intractable HA and was misdiagnosed as migraine, but i pursued with no prior h/o migraine and followed up with MRI (the lesion was missed on MRI in Feb) Still waiting for 3D MRI to rule out other lesion on Friday.. L2 lesion and solid rumors on the kidney.. Prognosis with brain mets is poor.. Hence urgency on my part to pursue hospice as both the brain RT and mets to brain may affect my cognition.. When do I let others to take charge of decision making for my health.. I do have advance directive but decision re my care at home vs a facility… I am burdened with the responsibility of a huge house and managing many aspects of life and at times feel overwhelmed. I am and have been very stoic all my life and circumstances made me ever more stoic and thus cannot share with others my deep concerns easily…help ! I have not found counseling, which i have periodically sought of much help.. But your guidance and direction from my fellow survivors is always helpful.. Thank you!

  • Dr West says:

    These are very personal issues, and thus they vary with the individual case. As for a possible timeline, you’re right that nobody can say anything precise, but it can sometimes be helpful for a patient to bring up hospice as a topic that is OK to discuss: many oncologists are reluctant to broach the topic until quite late in the course of the illness, sometimes beyond the point when it would be optimal to transition to hospice, out of fear of alienating the patient. Just conveying that it’s a fair topic of conversation could lead to a more open discussion of whether it’s really time to consider it or not.

    As for whether to go to a facility to be cared for or to be at home, we tend to prefer that a patient be home if that’s feasible, but it’s not always feasible. Caring for someone who is dying requires a good amount of time and energy — it’s a huge job, and it sounds like it wouldn’t be straightforward for your husband to manage. You may want to discuss it with your daughters. It could require weeks to months of them being there to care for you (unless you went to be with one of them, which is an option to consider), and I don’t know if their work/home lives would permit that, but it may be something that one or both would want to or at least be willing to do. If not, it’s good to have the mindset that the option of going to a family home (where some able-bodied people can care for one or more people who are ill in a home-based environment) or a nursing facility with hospice people also involved. A dedicated hospice facility is a wonderful option if it’s available, but in the US, they aren’t easy to find and have too many people needing them to have it be feasible for most people.

    I hope that helps. Good luck.

    -Dr. West

  • double trouble says:

    I am registered with Hospice, but am not an active Hospice patient. The paperwork is completed and they call me once a month to see how I’m doing. They have a facility or they will come to my home, whichever is appropriate when the time comes. I would prefer to remain at home if possible.

    I also struggle with the idea of letting others make my health care decisions for me. I think by the time that happens I will be too sick to care, but it is still a frightening thought. The only assurance I have is that I have made my wishes very clear to my family and to my doctors.

    It sounds like you have a lot of decisions to make, and I agree with Dr. West that you may want to discuss things with your husband and daughters. I think they will appreciate your admission that you can be a bit vulnerable. I am guessing that they will be very willing to help you wade through the decision making process, and that you will be a closer family for it.

    The end of our lives should be a time of peaceful transition, not a time of turmoil.
    Debra

  • forherbie says:

    Dr West—this is a very timely article/subject for me and my family since my husband has malignant pleural effusion. Even tho the onc suggested hospice at the end of rehab we have not gone that route yet. He is home and beginning PT, OT and home aide with Home Care. With his broken leg I figured he needs PT to keep him from being totally dependent. On the other hand I worry PT may be too much for him. I find it hard to have the hospice conversation with Herbie because I know that will be the end of his hope.

    Double trouble—signing up for hospice before you need it sounds so wise. I need to schedule an appointment with a hospice representative.
    Anne

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